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FG Syndrome Family Alliance

a/k/a: FGSFA

Address

922 NW Circle Blvd
Suite 160 PMB 290 Corvallis, OR 97330

Phone

617-577-9050

Fax

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800 Number

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TDD

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Email Address

info@fg-syndrome.org

Website

The FG Syndrome Family Alliance (FGFA) was established in 1997 as a support organization for families of children with FG syndrome, a rare genetic disorder characterized by varying degrees of mental retardation, delayed motor development, abnormally diminished muscle tone (hypotonia), characteristic abnormalities of the head and facial (craniofacial) area, respiratory problems, visual and/or hearing impairment, and/or gastrointestinal, skeletal, heart, and/or other abnormalities. Associated symptoms and findings may vary greatly in range and severity from case to case. Mental retardation is not an obligatory finding in the FG syndrome, and some individuals with the FG syndrome are gifted. Because FG syndrome is inherited as an x-linked recessive trait, it is usually fully expressed in males only. The FG Syndrome Family Alliance currently serves over 200 families around the world. The alliance is dedicated to providing information and support to families of children with FG syndrome; offering networking services including an online mailing list (listserv) and regional coordinators, enabling parents to exchange mutual support, information, and resources; and assisting researchers in the development of an international registry for FG syndrome. The alliance assists researchers by helping them access candidates for studies, including recent studies on gene mapping and behavioral phenotype. It is currently working with its medical advisors to create standards of care document for pediatricians caring for patients with the FG syndrome. The organization hosts an international medical and family conference every three years.

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